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Met with two GIs today

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Ulcerative Colitis
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Posted 2/14/2014 4:50 AM (GMT 0)
Well this morning I met with my GI doctor who I hadn't seen since November when I got my flex sigmoidoscopy. Usually I just keep in really good contact with his nurse practitioner who is amazing. My GI doctor on the other hand seems to be over worked and only have time to see me about every six months. After seeing the nurse last week I was frustrated because I'm steroid dependent right now and have had no relief with Simponi. She gave me a list of options one of which was to go to UW medicine to get another opinion/see about possible clinical studies. So it just happened that they were able to squeeze me in today so I went from my normal GI appointment and then to UW.

So my GI was pushing for me to stay on Simponi for now (no idea why since I have never seen any improvement with it), stay on 75mg azathioprine, hold on 15mg prednisone, start rowasa enemas nightly, and start 1 apriso daily (which i thought i had an allergic reaction to two years ago, but he beieves it might not have been that and wants to try it again). All this while waiting for vedolizumab, since i told him i will not go on tysabri.

My second appointment went very well. The doctor took over a hour to talk to me and explain what he thinks is the best plan for me. His plan was to stop simponi, start rowasa enemas nightly, start cortifoam every morning, then slowly taper prednisone. If I continue to do fine then he wants me to cut out cortifoam, then move to every other night rowasa. He said the back up plan if this fails is vedolizumab and that he would not recommend tysabri because i tried it and it failed it would rule me out for clinical studies. He really seemed to look at it as more of a long term picture, rather than a quick fix. Said it was about doing what we could to get me the healthiest, but in a way that leaves me the most options which is why is put tysabri towards the bottom of the list along with surgery (because i want to have children soon).

I think I'm going to go with what my second opinion planned out and I'm just hoping that GI doesn't mind, but I would much rather try to get off some of these harder drugs if possible.
Posted 2/14/2014 12:58 PM (GMT 0)
I don't think your GI will take offense, they just want you to get better so whatever you feel is a better plan is the one you should do. I don't like the idea of staying on 15mg pred if you're not seeing results and you're pred dependent. What did the 2nd GI say about the aza? Isn't 75mg a low dose for an adult? I would think the required dose would be around 100-150mg. Have they mentioned getting your levels checked for this drug to see where things stand?

The first sounds like more of the same. The second sounds like more of a workable solution but in reality, they are similar. The only difference is the addition of cortifoam which is definitely a good idea and one wants you off pred while the other is not rushing that. How long have you been on pred? If you've have issues with mesalamine, you could try colazal. Red34 is allergic to oral mesalamine but tolerates colazal.

Have you been scoped to see where things are active? I was just having symptoms and the scope showed left-sided activity so luckly I've been able to treat it well with rectal meds but if you are having a pancolitis flare up, you may not have good luck with that. Not to say you shouldn't try the foam but it really doesn't go beyond the rectum. Cortenemas can help a larger area but they may be difficult to retain if you're flaring. I would probably get both if I were in your shoes and try them.

I've seen some people doing trials for xeljanz, I wonder if that's one of the trial options you have? or is it vedolizumab?
Posted 2/14/2014 1:11 PM (GMT 0)
doc number two sounds like a keeper - doc number one seems like a tosser -
Posted 2/14/2014 1:25 PM (GMT 0)
I agree. The first doc seems too overworked and is not working with you while the second doc seems to care. I also agree that your Aza is rather low. Is there a reason why you're on such a low dose? Was it because you were on the Simponi as well? I know when I started on Remi, I was also on 6mp but my GI reduced my dosage.

Notso is partially correct, I couldn't tolerate mesalamines but did fine on Colazal for many years. However, I eventually became intolerant of that as well. Now I'm on Apriso, which is a mesalamine, but I'm doing fine with it so far...go figure! Lol
Posted 2/14/2014 1:43 PM (GMT 0)
I also preferDr. 2'sopinion.
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